For this episode of Karger’s The Waiting Room Podcast, we spoke with Elisa Martini and Helen Crawford from the International Federation of Psoriasis Associations (IFPA) about the skin condition psoriasis and the upcoming Psoriasis Action Month in August.
Elisa Martini is the Policy and Advocacy Manager of the International Federation of Psoriasis Associations (IFPA) and is thus responsible for developing and implementing IFPA’s advocacy and policy strategies at a global level. She has a Master’s degree in pharmaceutical sciences and a Ph.D. with a focus on psoriasis.
Helen Crawford is both a Board Member of the International Federation of Psoriasis Associations (IFPA) and Programs Manager at the Canadian Association of Psoriasis Patients. She is committed to patient engagement and has participated in several patient advisory boards. Furthermore, she has a degree in Linguistics from Carleton University and a Certificate in Social Media from Algonquin College.
The IFPA works on behalf of 125 million people living with psoriasis and/or psoriatic arthritis.
Note: The statements and opinions contained in this podcast are solely those of the speakers.
Hello and welcome to the Waiting Room podcast. First of all, please tell us a bit about the International Federation of Psoriasis Associations, your work for the IFPA and your connection with psoriasis?
Elisa: Yes. So, IFPA is, as you said, the International Federation of Psoriatic Disease Associations, and it was founded 50 years ago, actually more than 50 years ago, in 1971. We have celebrated recently our 50th birthday, let’s say, and we are an umbrella organization. Our members are national and regional psoriatic disease associations. They work all over the world. We have 61 members, and together we represent the voice of more than 60 million people living with the disease.
And I work as a policy and advocacy manager, so I’m in charge of the policy work at the international level, but also supporting our members with the advocacy and policy work they do nationally and regionally. And I have been working for IFPA for over five years, and before that I’ve been studying psoriasis as a researcher.
Helen: And my name is Helen and I am connected to IFPA as I’m newly elected to the Board of Directors in September. So, I’m a board member, but I’m also with the Canadian Association of Psoriasis Patients. It’s one of the member organizations of IFPA, and we work in Canada to educate those who are living with psoriatic disease, their caregivers.
We work to raise awareness about the skin condition, which I think we’ll get into a bit later. And we also advocate on behalf of patients living with psoriatic disease for better access to care. I’ve been involved with the organization since its inception in 2012 and have been working here ever since then.
Thank you. And see, I’ve already learned that it’s not IFPA, but IFPA, and I will use IFPA accordingly for the rest of the interview.
Helen: It’s easier than saying the whole word [laughs].
Definitely. So what does IFPA’s broader advocacy strategy and goals look like?
Elisa: So, we basically work twofold. Our aim is to unite the psoriatic disease community and lift the voices of those living with psoriatic disease. And we work twofold. We work at the international level with organs like the World Health Organization or the United Nations to represent our members and all people living with psoriatic disease. And we do this by being present in those settings where the decisions are made, and we try to advocate really for our community and demand the representation at the global level and in the global development agenda.
At the same time, we also want to strengthen our members that work at the grassroots level in their communities, in their countries. And we do this by supporting them, giving them tools, giving them resources and forming them really to be the best advocates they can be. And some of our programs and projects, for example, the Ambassador Project, we have, we form ambassadors for psoriatic disease that can speak up for us and for our community.
We organize a medical conference every three years to get in contact with the medical community and spread the reason and the latest findings within the world of psoriatic disease research. And we also hold a patient forum every year where we discuss the needs of the people living with psoriatic disease in certain areas. And then obviously, one of our biggest and most established programs is World Psoriasis Day that we organize every year on October 29.
Okay, thank you. Now, I’ve come across IFPA’s theme for 2023, which is “Universal health coverage”. And I found that quite interesting. Could you please tell us more about this theme in connection with people living with psoriatic disease?
Helen: Yeah, sure. So, in fact, the theme for the year, it seems in the global health community as a whole, is centered around universal health coverage, because actually later this year, the United Nations will be gathering all of their government representatives to discuss universal health coverage.
For people living with psoriatic disease, it often requires lifelong treatment. There is no known cure for psoriasis, so they do need treatment for their whole lives and as well as management once they find a treatment that’s effective. But treatments can be very costly. In addition to that, people that are living with psoriatic disease are more at risk of developing other chronic non-communicable diseases that also require lifelong monitoring management. And those costs can add up quickly when they’re not only just trying to manage their psoriasis, but the other comorbidities that could come with it. The costs can add up, and it would be unsustainable for a lot of people to be able to treat themselves if they don’t have proper coverage.
So, universal health coverage will actually ensure that people get the care that they need without falling into poverty, which a lot of patients sometimes, they have to decide between treating their psoriasis or feeding their families. This is one of the aspects that we really want to lift under the universal health coverage idea. But we also, and so it’s actually our theme for World Psoriasis Day as well as, you know, for the work that we’re doing every year, we have a focused theme. So, it is universal health coverage.
But we’ve also learned that that means different things to different people depending on where you live in the world. Some countries already have universal health care, and so it does mean, but there are still a lot of gaps in care for people living with psoriasis. Be it access to a dermatologist. It’s not just the cost factor. Where they live can often mean that they don’t have efficient access to a dermatologist. Some people wait a year or two to see a dermatologist once they feel that there’s a problem.
So, we also, along with the universal health coverage theme for psoriasis, so we’ve also added “access for all”. So, that doesn’t necessarily just mean access to medications, but access to a dermatologist, access to the supports that they need. And we encourage our members to use the universal health coverage theme in their campaigns or the work that they’re doing to best suit their situation, depending on where they live.
Okay, thank you. Now, you’ve already mentioned the financial aspect and the issue of access, but are there further unmet needs or possibly even demands of patients living with psoriasis?
Helen: Yeah. So, yeah, I did mention, you know, the access to a dermatologist, the costs to treat psoriasis are pretty universal. But we also, you know, along with focusing on access to care and treatment, there’s also awareness of the disease. There’s still a lot of stigma that comes for people living with psoriasis. And we want, you know, we do a lot of work to make sure that people understand that it’s not just a skin condition, it’s not just a rash, but there’s a lot of deep, complex issues that come with living with this disease.
We also work to raise awareness about the comorbidities of living with psoriatic disease. And there are several. And people need to be aware of what they are so that they can make sure that they are getting the care that they need. People living with psoriasis have an increased chance of developing psoriatic arthritis, which is why we also talk about psoriatic disease as opposed to just psoriasis and psoriatic arthritis.
And people need to be aware of what to look for if they’re living with psoriasis, because early treatment can also, can be really important to those that are living with psoriasis. So, those are some of the few things that we are working on at IFPA to ensure that people know more about this disease. And it’s not just a rash.
I see. To which extent is there a difference between children and adolescents as opposed to adults, especially regarding the associated challenges?
Helen: So, one of the things about living with psoriasis is that there is a hereditary component to it. Not all people who have an immediate family member living with psoriasis will get it themselves, but there is an increased chance that you will. And psoriasis in childhood is not that uncommon as we thought it was, you know, many years ago, And in fact, about a third of psoriasis cases actually start during childhood.
Psoriasis can differ from adults on their onset. So there’s, when you live with psoriasis, there are different triggers that can cause the onset of the disease. And in children it’s likely a trauma to the skin. So, an injection, a burn, some sort of scrape, stress or a bacterial infection such as strep throat; while in adults it’s more common that their triggers are, you know, related to a drug reaction, due to smoking, alcohol use or an underlying infection such as HIV. Children with psoriasis, and while psoriasis in general can often be mistaken for eczema, and they’re not the same. They can look similar, but there are a lot of differences.
So, it’s important, especially in childhood, to get diagnosed early. One of the major components for people living with psoriatic disease that can be increased in childhood and adolescence is that self-perception and body image for children and adolescents living with a very visible condition. There’s a lot of stigma associated with that, like I mentioned before, and, you know, people in their youth, it’s a very delicate time of life. They’re, you know, in school, and they’ve got a lot of external inputs coming at them from social media, from their friends and peers.
And having a visible disease like psoriasis or psoriatic disease can be very devastating for them, their self-esteem. Young people can feel isolated, that they’re alone in this. They get teased and bullied when they’re younger. So, this disease can have a big impact on their families, too, because it does affect their quality of life and their mental health and how they might be behaving at home as well.
I see. Let’s talk about treatment for a bit. Which treatments for psoriasis are currently available and are there maybe also new treatments on the horizon or is that difficult to say per se.
Elisa: So, there are several types of treatment available for psoriatic disease at the moment. They are prescribed depending on the severity of the disease and on how much body surface area is involved. For example, if the disease is mild or confined to just a few areas of the skin, then doctors could prescribe creams and ointments. For more extensive areas or more severe disease instead, there are several systemic treatments affecting basically the whole body, and the most advanced are biologic treatments. So, a different array of possibilities and treatments, and depending on the skin involvement and the severity of the disease, and also hopefully the patient preference to one [treatment] or the others.
On the horizon: So basically, many of the especially most advanced treatments, they target those molecules that are involved in the disease. The disease is, simplified, caused by an overreaction of the immune system. So, there are several targets within the immune system, and this inflammation that is out of control that can be targeted by medications. So, the current new advanced treatments and also treatment in the horizon, they are targeting these inflammatory molecules that are involved in the disease. On the horizon treatment for new targets are promising. The hope is to find treatments that target and reduce the disease while causing the least number of side effects as possible.
But there are also treatments coming out for some forms of psoriatic disease that are rarer, and they just have a different mechanism of action compared to, a different in nature compared to other forms of psoriatic disease. So, this population of patients that have not had a functional treatment that is performing well for them, they might hopefully find something that really works well and that can help them.
Obviously, the dream of our community is to have a cure. We are not there yet, but there are good treatments at the moment, so it’s very important that everyone has access to them and we get back now to universal health coverage and the theme of the year access for all. So really, the treatments to manage the disease well exist. People need to have access to them.
Definitely. I agree. And I’ve also come across the quote “Psoriatic disease is more than skin deep”. And I quite like that because it really hits the nail on the head, and it’s featured on your website I need to add. And although we already mentioned the aspects of quality of life for those living with psoriasis, is there maybe anything more you’d like to add on top of that quote?
Elisa: Yes. Psoriatic disease is more than skin deep. Like Helen said, it’s not just a rash. It’s not just a cosmetic issue. Unfortunately, this is a misconception that is still very spread. And we have talked about the impact on quality of life, on mental health, of the disease. There’s also an impact on workplace and career where people have difficulties maintaining a job, for example, because sometimes they need to take leave of absence because of the disease, or because for some jobs that are in contact with the public, it’s that this can make people the client uncomfortable. And so it’s difficult for the person to retain and continue working in a job in contact with the public.
Then we have talked about the financial aspect of psoriatic disease that makes the disease more than skin deep. And also, we don’t have to forget about the impact on families, on family life – for the person living with the disease, but also for everyone involved. So, difficulties maybe to plan ahead or plan vacations, or even medications impacting fertility. As Helen mentioned, the disease has a strong genetic component, so this might be a worry for people who want to have a family, start a family and have children. So, this is really a lot to think about for a disease that is said to be just a cosmetic disease.
Helen: If I can also add to that, too, if you don’t mind, we’re doing a lot of work in Canada right now about the impacts of psoriatic disease on intimate relationships. And we’re finding more and more so, especially with people who are impacted with psoriasis in intimate areas, it has a devastating effect on their relationships, their intimate life, their dating. And that compounds all those other things that Elisa’s just mentioned when they struggle with things that they’re embarrassed to talk about as well.
Yeah, and I can imagine that it does have quite a huge impact on mental health or probably on the stress level of those affected, too. I’d like to come back to the previously mentioned stigmatization and isolation, because I think that ties in with the mental health component. And I was wondering about the myths and misinformation that can be found, for example, on the Internet, for example, that psoriasis is contagious and stuff like that. And I believe you’re working also to get rid of these mistakes or basically it’s not correct. Would you like to add something to that?
Helen: Yeah, certainly. I mean, definitely one of the big messages is that you cannot catch psoriasis from kissing somebody with it, from standing beside somebody, sharing a seat on the bus with somebody living with psoriatic disease. It is not contagious. Elisa has kind of already mentioned what causes psoriasis or how psoriasis manifests, but we actually still don’t know what causes it, and we can’t cure it, but we can definitely treat it. But it is not contagious. And if you see somebody living with psoriasis, there has to be no fear there.
Unfortunately there’re other myths that come along with living with the condition, including people think it’s caused because of bad hygiene, that you don’t wash enough or that sort of thing. And that’s, in fact, actually the opposite is true that people with psoriasis, because things are so tender and sensitive, tend to pay a lot of attention to their skin care and being clean just for the risk of infection and that sort of thing. So, it’s actually the complete opposite. You know, we often talk about the fact that people think, “Oh, it’s just a skin disease. It’s just a rash. What are you worried about?”
And, you know, as we’ve touched on, it has severe impacts on people living with the disease, not just what manifests on their skin. It is an autoimmune condition that affects other parts of their body. There’s a lot of associated conditions that can come with living with psoriatic disease, such as diabetes, cardiovascular disease, obesity, metabolic syndrome, just to name a few, that people who are living with psoriasis need to worry about as well.
And there are also several forms of psoriasis that can be quite debilitating for people, especially living with psoriasis on your feet, for example. If you work standing up and, you know, you’re in so much pain, you can’t even walk. And there are some rarer forms of psoriasis, such as generalized pustular psoriasis, that can actually be life-threatening. It’s really important to be under the care of a health care provider, especially if you’re developing something rare like that.
Another myth is that it’s really easy to diagnose. You just look at it and go, “Oh, it’s psoriasis”. That’s not actually true. We’ve learned that people, it can take them several years to get to a proper diagnosis, which then delays effective treatment. We know that starting treatment early is really critical for people living with psoriatic disease. So, you know, anybody who suspects that they might have it should see their doctor as soon as possible.
And the other myth is that it can be cured. And, you know, as we’ve said a few times now, while there’s lots of research going on and a lot of promising work being done, there’s still no cure for the disease. And, you know, I see on the Internet all the time these magic pills and “I’ve been cured and go, go here and you’ll be cured”. And, you know, it’s really important that patients and people impacted get credible information from credible sources, such as IFPA and that they really need to be under the care of a licensed health care provider because there is no magic pill. While we wish there was, there isn’t. And there is no cure.
Elisa: And another fact on that psoriasis is easy to diagnose is that, as Helen mentioned before, it can be mistaken for eczema sometimes. But also psoriasis may have a different presentation depending on the color of the skin. And a lot of the information, also for medical professionals, is on people with white skin. So we have a project that IFPA called “All the Colors We Are”, where we show images of psoriasis on different skin colors. And we have a collaboration with the International Psoriasis Council, which is an association of medical professionals and dermatologists that are looking into the issue of diagnosis of psoriasis and presentation of psoriasis on different skin colors. So, this is another issue linked to the fact that it’s not always easy to diagnose psoriasis.
Yeah, I think that’s a very important aspect of mentioning people of all colors and not just us white people, so to say. Yeah. Thank you for adding that. Since we were speaking about the internet and credible information and trustworthy information, is there, for people with psoriasis, are there any apps or digital tools and gadgets that are trustworthy and helpful and which you could recommend?
Helen: So, you know, like you said, there is lots of information out there, and we’re in the day and age of Dr. Google and all this other stuff. And we really recommend that people contact their national psoriasis association. And they are all around the world. If they have trouble reaching out to them to contact IFPA. We can, you know, facilitate introductions. The organizations that operate on a national level, they’re actually the experts in the disease. This is what they do. This is their passion. And many of them live with the disease themselves, and they can provide the proper support and guidance to those resources that people are looking for.
We also, and Elisa’s alluded to it, have great information on our website, as we also have a map of all of our organizations and the projects that they’re participating in and how to reach out to them. But we always believe that patients should be seeing a health care provider to get the information that they need and not always trust what’s out there on the Internet.
So, I’m not necessarily going to sit here and recommend apps per se, but I would strongly encourage people to reach out to their national associations who can give them the information they need, that’s relative to where they’re living. Because what we’re doing here in Canada may not be relevant to somebody living in Japan, for example, or have the same value to that patient as something that’s a bit more regional.
Elisa: And in their own language.
Yeah, I think that’s a very important aspect. Yeah. Okay, thank you. We’re approaching the end of the interview. And last but not least, even though you already mentioned it at the beginning, what are your plans for Psoriasis Action Month in August as well as for World Psoriasis Day on October 29?
Elisa: So, at IFPA, every month is Psoriasis Action Month, and so we are advocating all year around. And now we’re busy preparing our patient forum in the Asia-Pacific region, and are gearing up for World Psoriasis Day. So, as we said, the theme is “Access for all”. We have good medication, good treatments for psoriatic disease. Everyone needs to have access to them. Everyone needs to see a dermatologist, their rheumatologist, connect to mental health professionals if they need that. So, we must ensure that good care reaches the people who need them.
And we are preparing the campaign material. We are giving ideas on activities. We are making sure that the community is connected to exchange ideas and also to amplify the voice of the whole community. And what we will do on World Psoriasis Day is really to lift the community, is to lift our associations and all the amazing work they are doing internally in their countries, in their region. So, we want our message to reach as far as possible. So, this is really our job, the World Psoriasis Day, and before that to give everyone the tools to make sure that everyone succeeds.
Excellent. Thank you very much. That has been quite enlightening. A lot of input and food for thought. Thank you, Helen. Thank you, Elisa. And, thanks a lot. Bye-bye.